Hi there! Im a regular over on the parenting board and recognize a few parenting peeps over here as well, so I decided to come over and intro. I also come with some questions
My son is 19 months now (baby #2 is on the way and due in January). We've been working with EI since DS was about 16mo. Originally the focus was speech/pre-language (he has a mild expressive language delay, but receptive is age appropriate, so they arent recommending ST right now). The new focus we have now is balance and sensory issues. He just started PT once a week, and we are in the process of getting a 2nd opinion from ENT (he's always congested, pulling at his ears...we started allergy meds almost 2wks ago and we're starting to see some improvement with his balance and speech, but he's still congested and tugging his ears (but no fevers or sign of infection), so there are still some concerns with possible tubes/adenoid removal) that we'll need to rule out.
He had a full Neuro consult at our local children's hospital 2 weeks ago, and the Neuro says she doesn't see anything overly concerning neurologically (i.e. brain injury, etc) and doesnt even recommend any imaging right now (which is a huge relief!). But she was the one who urged us to get a 2nd opinion from ENT. She isn't convinced that there are no ear/adenoid issues at play here. She did mention Developmental Coordination Disorder as a possibility if all other medical causes are ruled out...but otherwise, she did not seem phased by his balance issues...and was somewhat insistent that alot of this is pointing to ear issues.
Aside from that, through working with EI, they've also mentioned that he seems to be a sensory seeker. He makes great eye contact, communicates effectively through pointing/gesturing/lots of babbling, engages/socializes very well, and is easily engaged with an activity, he is constantly on the move, needs to touch/explore everything, doesnt sit still for long, tends to be a bit rough with the dog and cat, and generally seems to crave a lot of sensory input. They also mentioned that possibility of some of the balance/coordination issues being sensory related.
Although I am very relieved that neuro-related stuff isn't a concern, I'm feeling a bit tired and frustrated. With all these doctor visits, I cant help but feel like maybe we're fishing for something that isn't there, KWIM? I'm certainly not trying to borrow troubles. Like maybe we should just stick with the PT/OT for a while and see where it goes? Idk. At the same time I dont want to be ignorant either and I just want my kid to enjoy being a kid, while getting the extra help he needs.
I'd love some more info on SPD and sensory sensitivities and helpful therapies, from those with experience. Sorry to be so long winded. I also just wanted to say hello! You ladies seem like a very welcoming and knowledgeable group also, and I would love your feedback!
Re: Stopping by to intro...with some SPD ?s as well
They havent suggested a developmental pedi at this time, and have just been supportive of our involvement with EI services. The pedi seems to think this may just be an isolated motor delay and that he'll catch up with PT/OT. The EI therapists we're working with are the ones suspecting that a lot of this is sensory-related so that's out main focus now. They actually just did a follow up speech eval at my request last month and determined that his expressive language is not delayed enough to warrant ST right now...so I guess thats that. So the focus for now is sensory I guess.
I know he's so young that its all just fun to him right now, but its tiring at times for me. But I guess I just need to Change my perspective and be grateful, bc things could be much worse.
I mean, also, the difference we've seen in his vocalizations since starting the allergy meds has been great too. He's started making animal noises when prompted now "moo" for cow "tweet" for bird and he snorts for pig, which he wasn't doing a few weeks ago. His balance has also started to improve which is awesome! I guess the whole thing is just so perplexing to me. I hope this new ENT has some answers.
Eta Forgive my lack of knowledge re: this, but the neurodevelopment center we had his Neuro consult/eval at also evaluates/treats behavioral/developmental such as autism/adhd/developmental delays, etc. Wouldn't the Neuro have mentioned/covered this as a concern? Or is it something separate I'd have to request?
Like I said, I certainly dont want to borrow troubles, but in the same breath I dont ever want to be that parent blinded by ignorance and assume "nope, its not this/that...can't be". But in the case of full disclosure here, I feel like fear can dictate so much sometimes...I'm just plain scared and nervous.
@McRib thank you for sharing. I'm glad you were persistent and able to figure out the cause. I see what you mean about having to use your gut to filter stuff out. It's a tough gig, I'm seeing! I can go from feeling relieved and encouraged to feeling frustrated and nervous all in the same day, depending on who I talk to. It sucks. Especially bc I dont have many people IRL that know anything about this stuff.
My gut has been telling me all along that this may have a lot to do with his ears/adenoids, and to push harder at the ENT, so that's where I'm going to start, I guess...but I'm also not the one with a medical degree, so thats that. But now, with the additional urge of the neuro as well as EI that a lot of this sounds ENT-related, its definitely something worth investigating.
The therapist that comes out from EI every week has been educating me a lot on sensory differences, but man, is it such a confusing and intricate web to navigate through. Its all very confusing, but once its explained, it oddly all makes sense.
But I'll keep you posted after our next appt!
I agree with auntie. While I do not want to concern you even more, what you are describing are subtle, but still red flags. My son had great eye contact at that age as well and was very socially appropriate.
Unfortunately, only time will tell and you have to be patient, although I understand the "unknown" is very difficult. That's what wakes many of us up at night. The thing is, even with a firm dx, the "unknown" never disappears. You still wonder what their quality of life will be, how much they'll catch up and in what ways, what they are going to be like in adulthood (live independently or with you, and if with you: what happens when you're gone...etc.).
The only thing I will recommend is to treat the symptoms at hand. Whether it's ST, OT, PT, social skills...whatever deficits he's showing - address them, so he has the best possible chance to be his best possible self. The other stuff will sort unravel when the time is right and as he matures.
Good luck!
FWIW, I decided to go ahead and do the m-chat and only scored a "failing" answer on 1 question, which is definitely encouraging. Though I'll still follow up thoroughly with the neuro at our follow up appt.